Pages

Scott and Bridget met in 1993 and were married in 2001. In September of 2003 we welcomed our first miracle, James. 16 months later we brought home our second miracle, Annie. And in October of 2006 our family was complete with miracle #3, Gracie. Rett syndrome entered our lives when Annie was diagnosed on May 19, 2006. This is the life of the MacDonald family as we juggle 3 small children and battle Rett Syndrome until Gods perfect time when we are cured.

Friday, July 24, 2009

Annie is finally done with her 3 week intensive therapy program. We are all so proud of how hard she worked! I'm working on a video to put all of Annie's hard work into a nice slide show, but lets be honest, by now we all know how computer savvy I am. Here are a couple of videos taken today after Annie got home from therapy. I know I'm biased but Annie truely has the best brother and sister in the world! They love their sister and are so proud of her!This first video is James asking Annie about her therapy today - sorry about the lawn mower in the background, kinda hard to hear.

this second video is of Gracie, Annie is having a tough time after therapy today and Gracie is attempting to make her more comfortable. This video is through the screen and I move a lot so its hard to see but I just couldn't pass up this moment of Gracie taking care of her big sister - priceless!!

Thursday, July 23, 2009

Here's Annie working on getting to standing. Ugghh, this looks so hard but its good to strengthen those muscles. Annie's last day of intensive therapy is tomorrow, three weeks is over already. We have noticed increased muscle tone with Annie as well as a stronger core!! We aren't seeing any independent steps yet but the strength that she's gained is definatly a good sign. We will be throwing our champion a party tomorrow to celebrate her hard work - James and Grace are so excited and so proud of their sister!

Saturday, July 18, 2009

Since I've been posting so much about Annie's physical therapy I wanted to post a little "fun" video to let everyone know that Annie isn't just all work, she likes to have fun too! James and Gracie love to play computer games so naturally Annie probably does too. The only problem was short of buying a whole new computer that she's able to access (which as you can imagine is pricey!) we weren't sure how Annie would be able to use the computer. Well, thanks to some wonderful Rett mommies we have discovered something called a switch interface which basically allows us to hook up one of Annie's communication devices to the computer so she can use it as a switch to play games. And of course we also got a DVD rom with games that she can play alone or with 1 other person - James and Grace have to take turns playing with their sister. We just tried it out today and Annie loved it! This particular game is called switch invaders - for those of us who used to have Intelevision it's just like space invaders!! You can scroll to the bottom of the page and pause the music to hear the video better.

Tuesday, July 14, 2009

Today after the spa treatment and the workout instead of heading to the cage to do lunges and squats (OK, right now I'm feeling really guilty that my baby is working so hard and I haven't so much as gotten on the treadmill this week!) anyways, instead of the lunges and squats Annie worked on her hands, holding on to a cone and then trying to use a controlled release to drop it into her therapists hands. One of the most debilitating aspects of rett syndrome is the loss of purposeful hand use. Annie's hands actually worked so well when she was diagnosed that we didn't even get a diagnosis of rett syndrome at first. Unfortunatly it eventually slowly slipped away from her and us. Today Annie did so well with holding the cones that I caught a glimpse of what she was once capable of (picking up a toy, feeding herself) and felt so much hope that one day we WILL get it all back! I'm sorry but you will have to turn your head to the side again to see this video, if anyone would like to give me a quick lesson in video editing and uploading I certainly wouldn't be opposed!! ;0)

Monday, July 13, 2009

Annie's still doing great. She had Sunday off and was back at work Monday morning. At breakfast I told Annie that we were going to therapy and she started hyperventilating and smiling from ear to ear! It's hard work, she's not always all smiles and giggles when she's there but she sure is determined to get up and walk on her own! Here's some video from today's therapy - this is Annie stepping up onto a box. One of the hardest things for Annie is getting her knees to bend, she wants to keep them locked but they have to bend in order to walk and get up stairs.

Saturday, July 11, 2009

Today was Annie's 5th day of intensive therapy, she gets Sunday off and then starts up again Monday. The past couple days have been, well, intense! I think Annie's muscles finally became sore, not to mention the fact that as the days go by the exercises become harder and her muscles have to work more. We are seeing improvements though, which is so hopeful. Annie is much more stable when standing without her braces and she's facilitating a lot of steps forward with the assistance of the therasuit. I can't wait to see Annie come back on Monday after a little R and R and see how much she progresses. I finally figured out how to upload some video - yes, I realize it's sideways but seriously that's about the best I can do ;0) ! This is Annie walking with the therasuit on, if you can notice a little slack in the rope that's suspending her from the ceiling you'll see she's doing most of the work herself. This was the last couple minutes of her therapy so she's pretty worn out but is still doing great! Such a champion!
When I went running yesterday I thought about Annie and all the steps and muscles and motor planning that's involved with the "simple" act of walking and I was overcome with how beautifully and wonderfully made we all are. How much we take for granted being blessed with the ability to walk!

Wednesday, July 8, 2009

Annie had day 2 of intensive therapy today and she's still giving it her all! At the begining her therapist warms her up with heated blankets to get her muscles warm and flexible, then she gets the "spa treatment" which is an oil rub to further warm up the muscles. As you can see it's quite relaxing, so relaxing Miss Annie almost fell asleep right then.

After the spa treatment comes the stretching - this was hard today after yesterdays workout Annie's muscles were quite sore and tight. No pictures of that today, I was just trying to keep Annie calm. Then comes the exercise. Her therapist uses weights and ropes and pullies to isolate different muscle groups to strengthen them. Most of the exercises concentrate on the legs (because our goal is to walk). We are also paying special attention to Annie's right side because it is much weaker than her left so exercises on that side are especially important and much more difficult.After isolating the muscles and working them out for awhile Annie gets suited up and starts to work on standing, squating, weight shifting, bending her knees and transitioning from kneel to stand - all the things necessary for walking - we take so much for granted!Next up is the treadmill! They save the best for last, this is by far Annie's favorite, as you can see here!So that's day 2! Please continue to keep Annie in your prayers as she progresses to walking independantly!

Tuesday, July 7, 2009

Annie did amazing today. My expectations were completely blown out of the water. I assumed that 3 hours of therapy would be draining on my little Annie and we would hear some moans, cries and protesting but no - my little trooper kept right on working! Her endurance was amazing and inspiring! What a great first day, can't wait to get back to work tomorrow! I promise to get some video on here just as soon as I figure out how to do that - yes, I've been trying for the past 2 weeks but at some point I'll get it ;0) Until then here are some pictures of our champion in action working her way to walking!

working those glutes! Suiting up! kneel to stand getting those knees to bend

Sunday, July 5, 2009

Annie loves to walk. Despite her hypotonia (low muscle tone) and how much energy it takes for Annie to put together all the steps in order to perform the act of walking, she just LOVES it! If mom and dad have a busy day and don't get Annie up to walk as much as she would like us too she'll let us know. She enjoys walking around the house but when the weather's nice we head outside. Annie has a gait trainer that she uses and she also walks with a little tykes shopping cart or just holding onto mom or dads hands. She has never walked independantly. Next Tuesday is the first day of Annie's intensive therapy program which we are hoping will get Annie to the point of taking independant steps! The therapy is being done at crawl, walk, run, jump therapy clinic and will utilize a therasuit as well as the universal exercise unit. The therapy is 3 hours a day, 5 days a week for 3 weeks. Needless to say little Annie will be exhausted, but we know that walking is something that she longs to do and she is stronger, healthier and has more endurance there ever before. Walking will also help to strengthen Annie's bones, help with her scoliosis, strengthen her overall body and give her so much more freedom! Here is a quick video of how Annie walks right now. Look at the smile on her face, she is so determined! More videos to come as we watch Annie get stronger and stronger each day of this therapy! Go Annie!!OK, Sorry, technical difficulties, couldn't get the video to upload. I'll try again later!